Well, we have enjoyed another week at home. Both Taylor and Savannah have terrible coughs but seem to be getting a little better. They both went to the doctor and just have colds/coughs. I was really worried that Taylor would end up back in the hospital but she didn't

Sean and I celebrated our anniversary on Saturday. Grandma came over and Sean and I went for a long hike (see picture above). We did a 10.6 mile hike and enjoyed lunch after. It was great to get out for the entire day. Thank you so much Grandma!!!!

Taylor goes back to the clinic on Friday, April 2nd. This will be the first time that she will have to have a blood draw by getting a "poke". Now that her central line is out, her monthly blood draws will require a stick. We haven't told her yet...she is going to be really upset. If her blood work comes back "normal" we will be on our way back home. If her blood work would show and "blast (leukemia)" cells, they would have to do a bone marrow aspiration to see what is going on. I am already sick with worry about what Friday will bring. I think that we will now "live" in monthly increments. If things go well on Friday, we won't go back for another month....month to month. Please add Taylor into your prayers again......NED - No Evidence of Disease!!!!

Also, please say a special prayer for our friend, Kate McKrae. She is on her way to Houston to start radiation therapy for 6 week. Kate, Holly, and Aaron - our prayers are with you.....we love you!!!!

I will post again after our doctor appointment on Friday. Thank you in advance for your prayers!!

Love,

Kristen

Happy 70th Birthday to Papa (my dad - see above pictures!!). Papa and Grandma Renee were here for the weekend to celebrate his birthday. We had a great time and the girls were so excited to see Grandma Renee and Papa.

Today we all participated in the Kids Walk to Stomp Out Cancer at Chanen Beth Israel (the girls school). The walk is in honor of Rabbi Kahn's mother and there were tons of families out for the walk today. We did the walk with Papa, Grandma Renee, and the Stocker family and had a great time. It was great to see so many families out to support such a great cause.

We are all doing well. Taylor has a runny nose and bad cough but other than that is feeling well. She is loving not having her central line. She loves taking a "real bath". She loves being home and being a normal kid!!!

We go back to the clinic on April 2nd for a blood draw to make sure that her blood counts are all ok. They will also be looking for any blast or leukemia cells. Please pray they find none!!!

Our good friend Kate McRae goes in this week for a big test....please pray for a clean scan....she has been through so much lately.

Not much else going on....thank you again for all of your support.

I can't believe it has been one full week since we heard the great news that Taylor is in remission....I still wonder if I am dreaming.

The week brought many ups and downs. Taylor actually had her Broviac (central line) removed on Thursday. When I flushed her tubes, I noticed a very small hole in one of the tubes. This causes great concern because this puts Taylor at higher risk for infection. So.....she was taken in to surgery. She is now Broviac free and enjoyed her first real bath in 8 months this weekend. She and Savannah were in the bath until the water turned cold....they splashed and had the best time. So she is now "line free" and loving every minute of it!!!

Sean and I attended Elijah's funeral on Friday. It was a beautiful celebration of his life but heartbreaking. Elijah is truly in a better place but it just doesn't seem fair.....

So now that the words "remission" have been said and Taylor no longer has a central line there is so much to celebrate. It is what we have been praying/waiting for since June. Remission is a new found freedom and offers more of a "normal" life. But....as a parent, you cannot switch gears that easily. Taylor still has to have monthly blood draws, CT's, bone marrow aspirations, etc. Every time Taylor has a new bruise on her legs or stomach or complains that her legs hurt, my heart stops. Taylor is at such high risk of relapse that every day I wake up thinking, "is today the day??" I know faith and positive thinking are a must in our new cancer world but as a cancer parent, it is very easy to let your mind drift.....

My mind also wanders into what long term effects is Taylor going to experience from long term chemotherapy. When she was diagnosed, they went over numerous side effects of chemo...learning disabilities, heart problems, eye problems, her growth could be affected, infertility, and many more. Back when she first started chemo, I didn't have time to truly consider that although the chemo will hopefully "kill" the cancer, what will it also do to my 4 year old precious child.

So....do you see why...as a cancer parent, I struggle to fully celebrate the moment we hear "REMISSION?" The nagging question of "will she relapse" echoes in my brain every moment of every day. Please don't get me wrong.....I could not be more excited about remission....it is just very scary!!


I think that until I hear the word "cured" (which is roughly 10 years from now, IF Taylor doesn't relapse), I will not sleep soundly.

Please know that all of your well wishes, prayers, prayer chains, support, love, and generosity are never forgotten. We would not have made it through the past 8 months without all of the support we have received!!

Thank you also to all of the RN's, PCT's, and MD's at Phoenix Children's Hospital. You are all amazing. Thank you for loving Taylor so much!!

I will continue to provide updates every week or so....

My dear friend, Andrew Rubio, posted this on Taylor blog today as a comment. I wasn't sure if everyone was able to view the comments so thought I would re-post it:

Hi, this is Elijah's father wanting to thank everyone for your prayers and support.Meeting princess Taylor and her family has been a real blessing.In times like this we need to remember and take advantage of ever moment spent with loved ones.If you would like to read about our little angel and see a picture of him look in the Arizona Republic on Wednesday the March 10th,2010.We believe in the lords will,and calling Elijah to him was our babys'will.He is a loving and healing lord and he did exactly what we asked him to do.He healed elijah for eternity.Brandie and I thank you for your support and prayers.Will be keeping Taylor and her family in our prayers and have faith that little Taylor will not have to see the inside of a hospital for the rest of her life. God Bless everyone and share the love the lord showed you,EVERYDAY!!
March 8, 2010 8:36 AM

I never thought I would make this post but here goes:

Taylor had her bone marrow aspiration today and the results show that she is in REMISSION!!!!!

There is not much better news than that. I will post more in the next couple of days.....

Thank you all for your prayers!!!

Well...it has been a busy weekend. We had a garage sale on Saturday and the girls had a lemonade stand. The girls had a ton of fun and enjoyed passing out lemonade. Their theme was "Lemonade for Leukemia (thank you Courtney for making the sign!!)" They are putting some of their money in their savings account and sending some to Elijah's family. It was a great day....thank you to our many friends who stopped by!!

Today we had a birthday party for our good friend Remi....Happy Birthday Remi. The party was also to celebrate Taylor being home from the hospital. The party theme was a "Princess tea party". All the girls looked so cute in their fancy dresses. The tea party was adorable and the girls all had a GREAT time. Thank you so much to Keryn and Dave for opening their house for the party and sharing Remi's birthday party with Taylor....you are great friends and we love you!!!

Tomorrow is a big day....another bone marrow aspiration. Celebrating Taylor being home from the hospital today with her friends was bittersweet. If the results from this test do not bring good news, we will most likely be back in the hospital. Celebrating being home one day and having the test the next day is crazy.....my stomach is in knots!! With the recent passing of Elijah, I am reminded how horrible leukemia truly is. No child should have to go through this. I try hard to be positive and think healing thoughts but it is really hard. Tomorrow's test just has to bring good news.....

I will post when we know results. Please join us in prayer for Taylor, Elijah and all of the children battling cancer...it is a difficult journey.

Thank you all so much for your many texts, emails, and posts about Elijah. I have shared all of them with his parents and they are so touched. They asked me to thank all of you for thinking of their sweet Elijah.

Many of you have asked if there is a fund for Elijah. His parents have both been without jobs during this difficult time and have 4 other children at home. If you are interested in helping with funeral costs, checks and/or cards can be mailed to :

Andrew Rubio
6605 N. 55th Ave
Glendale, AZ 85301

You can also email Elijah's family, Andrew and Brandy, at abrubio7@cox.net

Thank you again for thinking of Elijah and his family.

It is with a very sad heart that I post that our dear friend Elijah Rubio has lost his fight with Leukemia. Please pray for his family.

Hello all - things are holding steady at the Souza house. We are all busy with our new schedules. I went back to work yesterday....totally overwhelmed but glad to be back. Taylor and Courtney (see above picture) are now picking Savannah up from school every day and are having a great time together. Courtney is amazing. It is such a great feeling for me to leave for work and know that Taylor is safe, loved, and having a great time. Savannah is also in love with Courtney. She stayed home from school on Monday only because she wanted to "play with Courtney!"

I have ended up at the pediatrician with Savannah a couple of times lately and we had to put her back on Nexium for Reflux. Savannah had reflux as a baby/toddler but had seemed to grow out of it and had gotten to be off of Nexium. Lately, she has been having alot of stomach pain and discomfort. Her pediatrician thinks it is most likely "stress induced reflux".....so she is back on medicine and seems to be feeling better. So sad that a 4 year old would be that "stressed!!"

Taylor has her next bone marrow aspiration on Monday. Each day of waiting brings more stress and as we get closer to Monday we will all be more anxious and stressed. I will post results as soon as we know something. Once again I would ask for continued prayers.....thank you so much!

A huge thank you to CBI and Rhonda Rush. CBI is the preschool where the girls have gone since 2007. Rhonda is a mom who has organized many fund raisers for us. Rhonda and CBI are now working with Suzy Hochman to promote the book sales of Hearts Connected. CBI and all of the families have been extremely supportive during this tough time....thank you so much.

Happy Birthday to Sophia, RN tomorrow. If you read this, Taylor loves and misses you!!!!

That is all for now...will post again when the test results come in.

Love,

Kristen